Living with Babyloss: Navigating the Grief and Uncertainties of Losing a Pregnancy

By Erica Goldblatt Hyatt, "Alex" Caroline Robboy and Peter Gearhart

Miscarriage, stillbirth, infant death, early pregnancy loss, reoccurring miscarriage, unsuccessful infertility, ending a wanted pregnancy for medical or other reasons, blighted ovum, molar pregnancy, ectopic pregnancy, chemical pregnancy-these are all forms of babyloss. There are very few things in life that are as painful as the loss of your pr

• Language: English
• Publisher: The Center for Growth, Inc
• Release date: Apr 5, 2023
• ISBN: 9798987687024

Book preview

Chapter 1

Understanding Babyloss

What is Babyloss?

The term babyloss is a comprehensive term that recognizes the multitude of experiences that range from early pregnancy loss to perinatal or infant death. These include miscarriage, stillbirth, infant death, early pregnancy loss, reoccurring miscarriage, unsuccessful infertility, termination of pregnancy for medical reasons, blighted ovum, molar pregnancy, ectopic pregnancy, and chemical pregnancy—all forms of babyloss. Each form of babyloss is unique, and the grief and challenges attending each is also unique.

This first section offers a medical discussion of the forms of babyloss before delving more deeply into the physical and emotional responses you will experience after losing a baby. We begin with the medical understanding of babyloss in the hope that knowing what occurs medically will be one step onto the path to recovery.

Forms of Babyloss

Miscarriage is the most common form of babyloss and, sadly, accounts for up to 20% of all pregnancies. Many think of miscarriage as happening early in the first trimester, but it is broadly defined as the loss of a pregnancy before the age of fetal viability, or the stage of pregnancy at which the baby would be born alive and have a chance of survival despite being severely premature. In the United States, this is usually before 22 weeks of gestation. In other parts of the world, the definition of miscarriage extends to 28 weeks of gestation. The medical profession differentiates miscarriages based on the gestational age of occurrence. This is because the potential causes of miscarriage in the first and second trimesters are somewhat different and the management and treatment of these can affect how the pregnant person and their partner will navigate the experience.

Early pregnancy loss, first trimester miscarriage, blighted ovums, and chemical pregnancies account for most miscarriages. Over half of these are due to a chromosomal abnormality. These are usually a random, one-time occurrence, although they are more likely to happen with advancing maternal age. Blighted ovums are a form of early pregnancy loss in which an embryo never develops or is reabsorbed, leaving an empty gestational sac. A chemical pregnancy can only be detected by a positive pregnancy test and usually occurs by 5 weeks gestation—about one week after the menstrual cycle was supposed to happen. Without the evidence of a positive pregnancy test, it might have been assumed that this was simply an irregular cycle that month. Early miscarriage is usually an isolated occurrence, and most people who experience these will go on to have healthy pregnancies in the future.

Miscarriage can be a deeply isolating experience because sometimes friends and family do not see this as a real loss since the pregnancy was so early and there was no living baby to see. However, many pregnant people are already attached to their pregnancies from the moment they conceive (if not, that is normal too!) and an early loss can still create grief over the loss of the hopes and dreams a parent had for their baby.

Second trimester miscarriage happens after 12 weeks of gestation and accounts for up to 20% of miscarriages. Those that occur early in the second trimester are similar to first trimester losses. Those that occur further into the mid-trimester often have different causes including uterine problems, infection, trauma, chromosomal abnormalities, fetal abnormalities, or poorly controlled maternal medical problems. The psychological impact of a mid-trimester loss can sometimes feel more devastating since the pregnant person has had several opportunities by this point to gain confirmation that their baby was supposedly healthy and growing. Often, they’ve already shared the news of their pregnancy with friends and family, and now they may experience a feeling of shame at having a loss.

Recurrent miscarriage is less common. Approximately 1% of pregnancies will have repeated miscarriages. Some people will have back-to-back miscarriages, and others will have healthy pregnancies interspersed between them. After two consecutive miscarriages, doctors will advise doing some tests to determine if there is a known cause of miscarriage. Even when the cause of miscarriage is unknown, however, there will be nearly a 70% chance of having a healthy baby after three recurrent miscarriages.

Without good psychological support, the journey of navigating each consecutive loss can become more isolating. The emotional, human factors can get lost in the clinical exploration to discover potential problems. Relationships can also become severely strained, which can, in turn, lead to difficulty in achieving future pregnancy goals.

Unsuccessful infertility treatment is an underrecognized form of babyloss. Not everyone is able to get pregnant on their own. For a variety of reasons, people need help to conceive a pregnancy. Every day many of them walk the in-between space of infertility and assisted reproductive technology (ART) having recently experienced sadness and disappointment after an unsuccessful embryo transfer. Some may become pregnant and then suffer a babyloss weeks or months after their initially successful infertility treatment. Their pain is most acute when they learn of their babyloss after finally giving themselves permission to accept that their investment in fertility treatment paid off.

For many of these couples, a miscarriage represents not only the loss of a pregnancy but also crushes their hope of ever becoming pregnant. Some women may struggle with allowing themselves to feel the despair of the loss of a successful transfer while trying to keep their game face, remaining positive and hopeful that the next transfer will succeed. There is no scientific connection between having a positive attitude and a successful implantation.

Women struggling with these two conflicting emotions need to know that feeling sadness and disappointment will not affect whether a subsequent embryo will successfully implant. Grieving the loss of a successful transfer and subsequent pregnancy is normal. If you are feeling sad, confused, or hopeless, this grief does not affect your chances of getting pregnant again. You experienced a loss, and you are allowed to grieve.

Ectopic pregnancy is a special condition in which a fertilized egg implants and grows outside the uterus, most commonly in the fallopian tube, and, in rare cases, in the abdomen or pelvis. An ectopic pregnancy will not progress to the age of viability and is treated with urgency; if left untreated or not managed early it can lead to bleeding that can threaten the life of the mother. Up to 2% of pregnancies in the United States are ectopic and account for up to 3% of maternal deaths. Often treatment of ectopic pregnancy involves removal of one of the fallopian tubes which can then contribute to future fertility problems.

Sometimes we don’t know we are pregnant until it is too late. In the case of an ectopic pregnancy, this can be especially shocking given the very urgent nature requiring emergency surgery that sometimes even compromises fertility.

The discussion around ectopic pregnancy can be heartbreaking and triggering for those who have gone through one. How do they balance the chasm between losing a pregnancy and receiving treatment that saved their life? Those who have had an ectopic pregnancy need to know that it is normal to struggle with what grief should look like afterward, and someone who has had this type of loss will have to cope with the psychological and physical shock of the experience. An ectopic loss may also be isolating when friends and acquaintances talk about pregnancies, even if someone else lost a pregnancy at a later stage of gestation. Those who have experienced this form of loss may even wonder about their ability—or desire—to try again, or experience ambivalence about pregnancy in general.

Molar pregnancy is a rare and dangerous condition that potentially subjects the pregnant person to the possibility of life-threatening hemorrhage, high blood pressure, a rare form of cancer called choriocarcinoma, and early onset preeclampsia that can lead to stroke. Often there is no normal embryo development in a molar pregnancy. In the cases where there is, development usually stops early, and a miscarriage is diagnosed. Approximately 1 to 2 out of 1000 pregnancies in the United States is diagnosed as a molar pregnancy. When managed well the threat to future fertility is low, but sometimes surgical interventions might be required that could potentially compromise future fertility.

Both ectopic pregnancies and molar pregnancies are especially complex. The grief of pregnancy loss is juxtaposed against the threat to the mother’s life and treatment that might compromise future fertility. This can contribute to a devastating mix of factors that cause a range of conflicting emotions from fear and grief to relief and guilt. And sometimes, because of the medical priority to manage physical health needs, these very human responses in the pregnant person and their partner might be overlooked. Focusing on the anxiety and post-traumatic stress that often come with surviving a life-threatening circumstance while at the same time losing a pregnancy or baby is key to navigating these types of losses.

Ending a Wanted Pregnancy (EWP), Termination for Medical Reasons (TFMR), and Termination Of Pregnancy for Fetal Anomalies (TOPFA) are particularly devastating forms of babyloss that occur when a parent has to make the heartbreaking decision to end the pregnancy at any stage of gestation. Sometimes a pregnancy is ended to save the life of the mother, such as in ectopic and molar pregnancies, or when the mother has a life-threatening infection, severe hyperemesis gravidarum, hemorrhage, or hypertensive crisis. Often a parent decides for EWP and TFMR to end a pregnancy complicated by a fetal condition, genetic, or chromosomal abnormality that is incompatible with life after birth, or because of severe medical complications that will lead to a brief life of pain and suffering for the baby.

Nearly 1% of pregnancies in women in their twenties and up to 3% of women in their forties are affected by chromosomal anomalies such as Trisomy 13, 18, and 21. Up to 3% of pregnancies are affected by structural anomalies—conditions including cardiac defects, spinal cord and brain malformations, and other syndromes and randomly occurring fetal anomalies. There is also a wide spectrum of anomalies that are far less common and often undiscovered until later in pregnancy.

Fetal anomaly, chromosomal trisomy, or genetic defect are not the only reasons for an EWP/TFMR. Sometimes a person chooses to end their pregnancy because of economic concerns, social circumstances (such as being in a dangerous or abusive relationship), mental health challenges, and more.

It is a unique form of pain to decide to carry a pregnancy to the end to deliver a baby that will die shortly after birth or to terminate in the middle of a wanted pregnancy. The decision to end a wanted pregnancy comes with conflicting feelings that can cause lifelong pain and guilt, even when the choice is the best one of all the bad options available.

For those who make the heartbreaking decision to end a wanted pregnancy, discussing the loss publicly and openly takes time and strength. Because of the controversial nature of abortion, many mothers who have ended a wanted pregnancy may suffer and grieve in silence. EWP mothers may worry that mothers who have experienced a miscarriage or stillbirth will judge their decision. Experiencing the loss of pregnancy in a society that is already uncomfortable talking about grief can be challenging under any circumstances. People who are grieving after EWP can often feel even more isolated and alone, fearing that they will be judged harshly. This makes it harder for them to seek support from family, friends, or professionals.

People who have ended a wanted pregnancy need to know that they are in control of their own grief story. They can choose to share as much or as little of their story as they feel comfortable with, and they may consult with other babyloss parents, a therapist, or a trusted family member or friend about whether to disclose that they ended a wanted pregnancy. You may be surprised to find that there is more support and empathy for your choice than you imagined, but you may not feel ready to justify, further explain, or narrate more of your loss. You do not have to. The need for privacy and understanding is the same for every person no matter how the babyloss occurred. The pain of ending a wanted pregnancy is real, and you are allowed to grieve.

Stillbirth occurs when a baby dies before or during delivery. In the United States this generally occurs after 20 weeks of gestation; in some parts of the world it is defined as occurring after 28 weeks of gestation. When a stillbirth occurs after the 20th week of pregnancy it might be described by medical personnel as an intrauterine fetal demise (IUFD).

A stillbirth occurs in approximately 1 in every 175 births. In about one third of stillbirths, the causes are not clear. The other two thirds, however, are the result of known causes such as lack of blood flow to the fetus through the umbilical cord, preeclampsia (dangerously high blood pressure in the pregnant person), fetal anomalies, physical trauma, and more. A stillbirth can feel especially heartbreaking, particularly if the pregnancy up until the loss was normal and the parent began making concrete plans for their baby to arrive. An especially difficult part of stillbirth is coping with the sadness that comes as a parent realizes that the baby they were expecting as part of their family will no longer be joining them.

Death of a newborn infant can sometimes occur from complications of severe prematurity, resulting in the death of the baby in the days or weeks after birth. Conditions that can contribute to the need for delivery weeks or months before the due date include incompetent cervix, preterm labor, placental abruption, worsening maternal or fetal disease necessitating delivery. The circumstances of prematurity can result in lifelong debilitating conditions for the baby including cerebral palsy, blindness, learning differences, and cognitive or physical limitations, or both. As with other forms of babyloss, the parents of a baby who died in infancy might find themselves in a conflicted position, caught between the grief of losing their newborn child and the relief of not having to manage the lifelong complications of prematurity. Instead of ending a wanted pregnancy in the mid-trimester, some parents may choose to deliver a live-born baby with lethal anomalies knowing that it will die shortly after birth in order to experience the life of a newborn, however brief. Parents who experience the death of a newborn can feel heartbreaking anguish and guilt.

There are so many forms of babyloss, and while the clinical understanding of each is helpful, it is also only the tip of the iceberg. The babyloss experience runs deep. Not only will a pregnant person have to heal from varying degrees of physical health effects, but the mental health consequences of babyloss are real, take longer to recover from than the physical effects, and may stay with you for years. No matter how a babyloss occurs, it can be accompanied by deep grief, confusion, guilt, and conflict for a mother or couple. And, truly, your own babyloss will feel—and be—unique.

Know that there is no one way to mourn your loss. There is no ‘right’ way to grieve. Know, too, that your pregnancy mattered and your grief matters.

What follows next is guidance to help you understand and manage the grief and physical and psychological concerns you are likely experiencing in the immediate aftermath of babyloss.

Chapter 2

Recognizing your Grief, Emotions, Feelings, and Physical Symptoms after Babyloss

The Immediate Aftermath

We were so alone. We didn’t know how to talk about our loss.

— Sam and Jessica after their third miscarriage

What happened? What did we do wrong? Where do we go from here?

—Ron and Sasha after recovering from an ectopic pregnancy

There is so much to look forward to during pregnancy: hearing your baby’s heartbeat for the first time, watching your belly round into a bump, and feeling those tiny kicks. For some parents-to-be, there is a special kind of excitement that goes along with telling family and friends that they are expecting. Some expectant parents might post the news on social media after the first pregnancy test, and others might wait until the 12-week mark to share.

However, there are times when, devastatingly, a baby passes away before birth. Or sometimes a baby dies in infancy. When this happens, mothers experience disconcerting physical symptoms and, along with their partners, a host of overwhelming feelings, painful questions, and grief.

Short-Term Physical Symptoms

The real insult to injury was when my milk came in and there was no baby to feed. My breasts were completely engorged and I had to wear tight bras to sleep at night. They leaked for a few days, and it was a constant reminder that Henry wasn’t here, but that my body didn’t seem to know the difference.

— Gage, stillbirth

For a mother, the early days of grief feel so very physical. That’s because there is a significant physical component to this loss—from bleeding, to cramping, aches and pains, and your milk coming in. It is common for parents not to think about the physical symptoms they might experience in the aftermath of losing a pregnancy. There’s so much to take in during the decision-making stage that it’s understandable for a parent to feel blindsided. But you’re bound to experience some distressing physical and psychological symptoms after a babyloss. Depending on the stage of your loss, your body may be reacting in several ways.

Here’s what those physical symptoms look like and how you can prepare.

Bleeding

Bleeding is a common symptom that follows babyloss. If you have had a healthy pregnancy before, this can be especially triggering, as bleeding usually comes after a successful birth. In this situation, however, bleeding is another reminder of what you have lost.